I've had parents call me about the possibility of refugee status to the United States. Can you believe it? Canadian refugees to the United States where they don't discriminate against disabled children

Federal laws such as these are what make the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs and housing for people with autism and other disabilities is not optional. It is the law.

What is urgently needed now are three pieces of federal legislation – a Canadians with Disabilities Act, a Mental Health Parity Act and a Federal Individuals with Disability Education Act (IDEA). All these federal laws are what makes the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs, housing, et cetera, for persons with autism and other disabilities is not optional -- it's the law.

There are no legal avenues left, she said, adding that parents have three choices: move to the United States, put children in the care of the government, or try to keep paying for the treatment on their own while trying to get federal legislation that is similar to that in the U.S.

The United States, said Freeman, has two "extremely" strong laws - the American Disabilities Act and the Individual Disability Education Act - to protect people with disabilities, she said.

"We have nothing in Canada except for the Charter [of Rights and Freedoms]. We should be proud of our Charter, our Charter is fantastic," she said, "but you know what? It's not worth the paper its written on."

Indeed, these are only a handful of the possible statements from Canada's elite autism advocates, all praising the US as a place where services, particularly ABA/IBI, are provided to autistics as a matter of course. Ms Lewis' "refugee" story appeared in the media around the world, informing everyone that the US is the place to be if you have an autistic child. And who would dare, who would have the temerity to disagree with these autism advocacy heavyweights?

The purpose of this video is to show the harsh realities of living with autism, and I think this hard-hitting video accomplishes this extremely well. I'll get back to this point a bit later.

What is striking about this video is that all the autistic children are doing extremely badly, and all their parents are miserable and have appalling lives. This is according to the parents themselves. Their lives are hell. Their children are doomed.

They must live in Canada, where according to our autism advocates, the services for autistic children are so grossly inadequate that Canadian parents are considering becoming refugees to the US, where the ABA/IBI services they demand are there for the taking. And as you can see, Canadian autism advocates are demanding sweeping changes to laws in Canada so that autism services are provided exactly like they are in the US.

But back to Autism Every Day. It's Canadian, right? It must be, because our famous autism advocates support it to the hilt.

But in reality, or in "autism reality", Autism Every Day is 100% American. Those doomed children and their suffering parents are all Americans. They live exactly where Canada's autism advocates want to live, so they can--they say--freely and easily get all the ABA/IBI services they want.

Because disagreeing with autism advocates is perilous (see Canada's notorious autism advocacy flagship website, commonly known as the "hate site"), we are required to assume that the American parents in Autism Every Day had free access to the services that autism advocates in Canada are demanding--that is, unlimited ABA/IBI.

Another glossy, hard-hitting Autism Speaks effort, an article in the magazine Town and Country, helpfully shows that American children are getting ABA/IBI, sometimes in impressive amounts (e.g., 50hrs/wk), and of course this would be state-of-the-art ABA/IBI.

As a result, after 3 years of very intensive ABA, one autistic boy still cannot dress himself independently and is projected to require three more years of his 50hrs/wk ABA program to be able to signal "bathroom". His parents are miserable and devastated, and express their wish that their son would drown. Why? Because it would end his suffering, even though ABA/IBI is promoted as "fun" (strangely, in this Autism Speaks article, it's called "grueling"), and this boy is in ABA/IBI most of his waking hours. These parents, who profit from an optimal level of services, also claim that many other parents of autistic children feel just the same as they do, about wishing their child dead.

So Autism Every Day, and Autism Speaks in general (keeping in mind that they have now absorbed Cure Autism Now, as well as NAAR), is a testament to the failure of the services demanded by Canada's autism advocates.

And if Autism Every Day represents the true reality, the "autism reality", of living with autism, as our powerful and influential autism advocates forcefully claim, then it is all the more a monument to the conspicuous failure and remarkable ineffectiveness of the services that these autism advocates are demanding.

Autism advocates in Canada have insisted very forcefully that ABA/IBI is an effective treatment for all autistics. Yet they promote Autism Every Day, in which the 100% failure of the easy availability of ABA/IBI to help either suffering autistic children or their miserable, suffering parents is dramatized to great effect.

Autism Every Day is an excellent record of the harsh realities of autism, if you see it from the children's point of view.

This is the very harsh reality of being an autistic child in a world where autism advocacy is not only prominent and predominant, but ubiquitous and the law.

This is the harsh reality of being written off as a very young child, of having your parents describe you as an appalling burden, of knowing that your parents are ashamed of you, of knowing that your mother wanted to kill you and refrained only because you have a non-autistic sister, of knowing that your parents want to make sure that children like you no longer exist, of being shunted and talked around as if you are non-sentient props, and then being called unresponsive.

When I watched Autism Every Day, my first thought was, what wonderful children. What great, totally cool, wonderful children. I watched it with the sound off. Those kids are marvellous. They can do so many things. They have courage out to there. They have lived through stuff that no child should have to live through, and they are still trying as hard as they can to communicate--to communicate with those who are widely disseminating the anti-scientific information that they can't learn or communicate at all.

Friday, January 19, 2007

This paper was accepted today. I'm pretty happy about that. These are the Raven's Progressive Matrices data, some of which we presented in preliminary form at IMFAR 2005 and at the 2006 AAAS conference. They draw attention to the fact that there should be a lot more caution than is currently the case, when making assumptions about what autistics can or can't do. Some serious rethinking is necessary, about intelligence in autism and possibly intelligence in general. Our data demonstrate that areas that have been presumed to be dysfunctional in autism (e.g., fluid intelligence, high-level abstract reasoning) are instead strengths. We have called into question the basis for dividing autism into presumed "high" and "low" functioning.

This paper will probably be published in late 2007. It's my first paper as first author, and what a privilege it is to work with such wonderful colleagues and participants.

Sunday, January 14, 2007

I previously wrote about this UCLA pilot study here. What follows is the description of this experiment from Ivar Lovaas' recent book (Lovaas, 2002):

A pilot study done at the UCLA (University of California, Los Angeles) Autism Clinic provides a particularly vivid example of apparent sensory deficits in children with autism. In an attempt to ascertain where a nervous system sensory "block" may be located, the chilren's heart rates, galvanic skin response, pupillary dilations and constrictions, and orientation to stimuli were recorded. Clapping one's hands directly behind a child's back and observing a failure to startle is often used as a diagnostic indicator of autism. We failed to observe a response to hand clapping even though the clapping was loud. Subsequently, and without prior warning, we increased the loudness and fired a very loud noise (from a starting pistol) 2 feet behind each child's back. This sound was of sufficient strength to elicit a major startle in attending adults. In contrast, little or no change was detected in any of the children's behaviors, despite the sensitivity of the measurement instruments employed. However, there were major alterations in all recordings when, instead of firing the loud starting pistol, the children heard the slight sound of a candy bar being unwrapped out of sight. It seemed as if the children would attend to their environment if there was a payoff for doing so. In evaluating the outcome of this experiment, it is important to be reminded of the large differences among persons with autism. In regard to the experiment with the starting pistol, a child with a fear of unusual sounds, such as those from vacuum cleaners or ambulance sirens, may well have reacted differently from those children we observed in the study.

Wednesday, January 10, 2007

Morton Ann Gernsbacher is President of the Association for Psychological Science this year, and she's been giving autism a high profile in many of her monthly columns in the APS Observer. You can find two previous examples here and here.

Her latest illuminates a series of results in a trendy area of science, particularly in autism research. That's the measurement of cortical thickness. There have been several published papers, and surely more will come, asserting that autistics' cortices aren't the right thickness at all.

Dr Gernsbacher has put together a big heap of findings about thick and thin cortices, complete with how they've been interpreted. She seems to have done some work on effect sizes too. Now whose cortex is too thick, too thin, or just right?

Sunday, January 07, 2007

According to Canada's eminent autism advocates, anyone who criticizes ABA-based autism interventions is, to put it more politely than they do, ignorant, misguided and reprehensible (you can see this on their flagship website, which I respond to here; see also here). It looks like I'm going to overlook this forcefully-promoted pillar of autism advocacy--that ABA is above science, ethics, and scrutiny--again.

Harold Doherty, an influential and powerful Canadian autism advocate, has helpfully supplied what he sees as definitive evidence that ABA-based interventions are "Most Effective In Educating Autistic Children". This is interesting, because Mr Doherty also supports the view that ABA-based autism interventions are not education at all, but are "medically necessary" treatment.

In fact, right now, we have one set of autism advocates heavily lobbying Parliamentarians (Senators and MPs) to alter the law and mandate ABA-based autism interventions as "medically necessary" for all autistics in Canada. And we have another set of autism advocates going to the Supreme Court of Canada, just down the street, to deny that ABA-based autism interventions are medical treatment or "medically necessary" treatment or medical in any way at all. Those are the autism advocates who support the Wynberg trial decision.

But back to Mr Doherty's science.

Mr Doherty supplies three sources to support the effectiveness of ABA as education for autistic children. One is the MADSEC report. One is a list of papers or reports, and short descriptions of same, provided on Dr Lovaas' website (the Lovaas Institute, you can see this page here; Mr Doherty has copied parts of this into his post). The last is the Auton trial decision.

The MADSEC report bases its conclusions on a total of three ABA controlled trials, Lovaas (1987; and follow-up, McEachin et al., 1993), Birnbrauer and Leach (1993), and Sheinkopf and Siegel (1998). The first two are prospective, while the last is retrospective. Lovaas (1987) and follow-up are dependent on the use of aversives, and therefore represent a treatment which is no longer acceptable. Birnbrauer and Leach have presented a 10-year follow-up, showing that the few children who did well in their study (four of them, none of whom achieved "normal functioning") did not maintain these gains on follow-up (Birnbrauer and Leach, 2006). Sheinkopf and Siegel (1998), the retrospective study, features no autistics who achieved "normal functioning", and also shows no correlation between intensity of treatment and outcome measures. Lovaas (2002) forcefully criticizes this study, and does not accept its validity.

Then there is the list from Dr Lovaas' website, or the parts of it reproduced by Mr Doherty on his blog.

First there is this claim,

Between 1985 and 2005, there were over 500 articles published concerning Applied Behavior Analysis and autism.

I don't dispute this at all. I've read quite a few of these articles. Dr Lovaas does not make any claims as to what these articles have found or their quality. Arguing that quantity of articles is evidence of treatment effectiveness is akin to arguing that the ToM, EF, and/or WCC accounts of autism must be correct because there are hundreds of articles about these theories, or that social skills training must be effective because there is an impressive number of articles about this kind of intervention.

Here's the rest of the list Mr Doherty provides from Dr Lovaas' website:

Lovaas (1987): In multiple post-1987 papers (e.g., Smith & Lovaas, 1998), and in the book Dr Lovaas recommends (Lovaas, 2002), Lovaas and colleagues have underlined the problem of the 10 non-normal-functioning children profiting little from ABA. E.g., their IQs did not increase at all, even though some stayed in their ABA programs for 10 years. Lovaas (2002) has stated that these children must stay in ABA programs for life. There is also the essential role of physical punishment (contingent aversives) in this study, which you can read about here, complete with quotes from Lovaas (1987). A Rett's girl was in Control Group 1, which was not reported until Boyd (1998). The savant abilities of at least one of the experimental group children were extinguished (Epstein et al., 1985; I wrote about this here). Also of interest to Mr Doherty (who has weighed in about high and low functioning in autism, as well as about savant syndrome), five of the autistic children in Control Group 1 (a group which had poor outcomes) were high-functioning. Mr Doherty is a leading autism advocate, so I will assume he knows where that fact is reported.

McEachin, Smith & Lovaas (1993): the follow-up into school ages of Lovaas (1987): See above. One of the "normal functioning" children loses this status.

Jacobson et al. (1998): This paper lacks a factual foundation, because in 46 years of behaviour analytic research in autism, there is no peer-reviewed paper which reports data about the adult outcomes of children who received 3 years of ABA-based intervention between the ages of 2-6. There is no controlled trial of a non-aversive early ABA/IBI that has a published follow-up into school ages (the one presented follow-up presented a failure; Birnbrauer & Leach, 2006). Also, Canada's autism advocates have rejected this level of service (3 years of ABA) as unacceptable, and Dr Lovaas claims that children who do not achieve "normal functioning" by age 7 must stay in ABA programs for their entire lives (Lovaas, 2002).

The NYSDOH report: This report found only four studies (of the 232 looked at) of ABA-based early intensive interventions that met their standards: Lovaas (1987) together with McEachin et al. (1993); Birnbrauer and Leach (1993); Smith et al. (1997); and Sheinkopf and Siegel (1998). All these papers have been described above except Smith et al. (1997), a retrospective study (not a true experimental design) showing very limited results (increase in IQ of 8 points, almost half of which is accounted for by one participant; no "normal functioning").

The Surgeon General's report: The only ABA-based study cited is Lovaas (1987) together with McEachin et al. (1993).

Eikeseth et al. (2002): A ME-Book (Lovaas, 1981) based ABA program is compared to a an unknown intensity of ABA plus a lot of contradictory approaches (this is called "eclectic" treatment). The groups are unmatched, and finish with no significant differences, even though the experimental group had greater gains. The study is for one year only. None of the children achieve "normal functioning".

Howard et al. (2005): This is also a one-year study that compares an ABA-based intensive intervention (for which there is no manual), to "eclectic" treatment (ABA of unknown quantity or quality, plus contradictory approaches), as well as to generic segregated special education. The groups aren't matched. None of the children achieve "normal functioning". The reported "effectiveness" of the ABA-based treatment does not take into account the total failure of two children, who could not continue in ABA, and whose data were discarded.

Sallows & Graupner (2005): The 48% rate of "rapid learners" can only be achieved by combining the control group with the experimental group, producing an uncontrolled trial. The control group performed better than the experimental group. This was not a feature of Lovaas (1987). This paper shows that neither intensity nor quality of ABA-based interventions is relevant to outcomes. Cohen et al. (2006, see below) point out that this study does not have a comparison group. Also, Sallows & Graupner (2005) report using a wide variety of approaches apart from Lovaas ABA, including non-behaviour analytic approaches.

And finally,

Cohen et al. (2006): The limited number of significant differences between outcome measures in the unmatched groups vanishes when non-matched variables are accounted for, with the one exception of classroom placement. Kasari (2006) has pointed out that classroom placement is a measure of parent pressure, rather than of child achievement. The control condition is segregated special education, of less intensity (less hrs/wk) than the ABA treatment.

Mr Doherty's last source is the Auton trial judge, and the Auton trial decision. This is his evidence that randomized assignment, a standard used to protect and benefit all non-autistics, should not apply to autistics. Mr Doherty further adds that there are ethical implications to randomized assignment. This is on the assumption that Lovaas-type ABA is known to be effective and therefore, you cannot deprive any autistics of this treatment.

So let's sum up Mr Doherty's science.

The evidence from the MADSEC report (which did not have to pass peer review) amounts to very little in the absence of an aversive-based study. Only Sheinkopf & Siegel (1998) is left, a retrospective study that Lovaas (2002) strongly objects to. Mr Doherty may be arguing that autistics don't need controlled trials either.

The list of studies and reports from Dr Lovaas' site is selective, and the selected studies are selectively reported. Dr Lovaas does not include all the ABA controlled trials, and he includes only one uncontrolled trial. Sheer number of studies (without reference to their quality, content, relevance, etc.) is not evidence of effectiveness. Using the website of an organization which provides a particular treatment as evidence for the effectiveness of that treatment represents the kind of low standards that autism advocates demand for autistics.

Finally, Mr Doherty uses the Auton trial decision to deny the importance of randomization. This assumes that this decision is scientifically accurate, and is based on peer-reviewed science. That is demonstrably not the case (e.g., see the description of the 1 in 64 study, which was not even in evidence). However, let's accept this for now and look at the evidence in Auton. There were only two controlled trials of ABA-based interventions in the evidence in Auton (in fact, these were the only primary sources reporting data about ABA-based interventions). These would necessarily be the studies being referred to by the trial judge re the importance of randomized assignment. One of them (Lovaas, 1987, and follow-up) is dependent on aversives, and represents a treatment that is currently unacceptable. The other (Smith et al., 1997) is not a true experimental design. It is retrospective, and, as reported above, has weak results which did not support the claims made by the Auton parents. These two studies are insufficient to argue that failing to enroll all autistics in non-aversive ABA programs (on the grounds that their effectiveness has been proven) is unethical.

ABA/IBI does have one existing randomized controlled trial (Smith, Groen & Wynn, 2000, 2001). This is left off Dr Lovaas' page, even though it was conducted at UCLA by behaviour analysts he trained and oversaw, and is of greater importance than Lovaas (1987). Smith, Groen & Wynn (2000, 2001) represents both the scientifc standards that would apply to Mr Doherty and all non-autistics (a randomized controlled trial), and the outcome of a treatment that is not, unlike the treatment reported in Lovaas (1987), dependent on contingent aversives.

A description and criticism of Smith, Groen & Wynn (also, accurate information about the NYSDOH report, and about the importance of randomized assignment) can be found here. I'll add that the reported increase in IQ is confined to the PDD-NOS group. Also, there is a second erratum (Dr Gernsbacher describes one of the published errata, which eliminates the reported result in language) published by the authors to correct another important error in the text (re educational placement).

There is also the Canadian study, Eaves and Ho (2004), which shows no effect of kind or amount of any currently marketed autism treatment in the "critical" 2-5 yr range. About half the children in this study were in ABA programs, and their outcomes did not differ from the children who were not in ABA programs.

I can also suggest comparing the standards, quality, etc., of the reports and sources favoured by Mr Doherty (MADSEC report, Dr Lovaas' website, the Auton trial decision) with the sources which have concluded that when it comes to autism interventions, we do not have sufficient information to decide what is effective for all autistic individuals (e.g., NRC, 2001; Volkmar et al., 2004). The NRC also alluded to the absence of basic ethical considerations in the entire body of autism intervention research.

I agree with Mr Doherty that there has been and no doubt will continue to be a lot of incompetent, non-valid and self-interested criticism of ABA-based interventions, including from behaviour analysts. Indeed, this poverty of criticism is why I wrote The Misbehaviour of Behaviourists, almost three years ago, and also in part why I wrote a series here about aversives. Putting sourced and referenced accurate information on the record is important, so that sweeping statements (e.g., about criticisms of ABA) by influential and powerful leaders like Mr Doherty can be verified against the public record. The record shows that I've been as harsh a critic of incompetent criticisms of ABA-based interventions as any behaviour analyst. This does not mean that accurate criticism of these interventions is non-existent, unnecessary, reprehensible, or impossible.

The above does not represent anything more than a brief response to some aspects of Mr Doherty's post. I haven't touched on major issues in the behaviour analytic literature, like diagnostic standards, accounting (or not) for medication, etc. I've only provided tiny, superficial descriptions of studies and reports, though what I wrote can be verified, and they're all studies and reports that I know well (I don't know exactly which 500 studies Dr Lovaas is referring to, but I've probably read a lot of them). I haven't gone into the existence of a successful controlled trial of a non-ABA-based intervention, reported in a peer-reviewed journal. Etc. And I've barely mentioned ethical consideration, which is paramount. I've failed to suggest that Mr Doherty provide sources for the kinds of criticism he considers should not be made. I've forgotten to point out the dramatic contrast between the huge amount of existing autism research and the concurrent poverty of knowledge about autism and about how to help autistic people--a contrast which might have something to do with the effectiveness of autism advocacy. And later, I'll try to post an outline of some of the major bases on which ABA-based interventions can and should be criticized.

The onus is on autism advocates like Mr Doherty to show how discarding basic scientific and ethical standards, the standards which protect and benefit themselves, helps autistics. My own suggestion is that lousy scientific and ethical standards are bad for everyone, including those who, like autism advocates, demand that they be imposed on autistics.

(If this post looks like it was written in pieces by a person busy doing other things, that's because it was; some of the information above has already been provided on this blog, see e.g., here and here , as well as on my website, but autism advocacy involves repeating the same things over and over, which means responding can be tedious).

References:

Birnbrauer J.S., & Leach, D.J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63-74

Jacobson, J.W., Mulick, J.A., and Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism--general model and single state case. Behavioral Interventions, 13, 201-226.

Kasari, C. (2006, June). What are the active ingredients of interventions? International Meeting for Autism Research. Montreal, Canada.

McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.

National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. National Academy Press, Washington, DC.

Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Tuesday, January 02, 2007

A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.

This is regardless that, as the New Scientist points out eventually,

Even the most technically advanced implant provides the brain with only an extremely coarse approximation of the signal provided by a healthy ear.

These findings are important, because surgical implantation in the second or third years of life, as was more usually done, has not been so successful:

Until recently there was no good evidence that implants routinely improved children's chances of developing normal speech and language, raising fears that those fitted with implants would be stuck in a no-man's land - part of neither the hearing world nor the deaf one.

Earlier this year, through a landmark legal decision, sign language became a de facto official language in Canada. But in the New Scientist article, "normal" language is defined as excluding sign language, which is like excluding any other language (e.g., French, Cree) from being "normal" language. The article goes on to say:

That concern may be put to rest by the new studies. In one, presented last week at the Bionic Ear Institute in Melbourne, Australia, a team led by Richard Dowell at the University of Melbourne showed that 11 profoundly deaf children who received cochlear implants before the age of 1 had entirely normal language development at least up to age 4 to 5. Language skills were assessed using a battery of tests, including routine tests of comprehension and expression and observing at what age they started different types of babbling and using key words.

Their language development was also superior to a further 36 children who had been implanted at age 1 or 2, suggesting that the earlier the implant is fitted the better. "The kids still don't have normal hearing, but they have normal language. They can have a conversation, make a joke, lie, tease - all those normal things that 4 or 5-year-olds do," says team member Shani Dettman.

Again, "normal" language is defined as excluding sign language. Then there is the implication that native signing deaf children can't have conversations, make jokes, etc. Only children who have "normal" language (meaning, not sign language) can do these things. The New Scientist goes on to quote a researcher, Ann Geers, who was involved in another study reporting the effectiveness of very early implantation:

Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."

Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.

This is how the human rights of homosexuals would have disappeared if Ivar Lovaas' NIH-funded Feminine Boy Project had not been challenged as to its ethics--versus its effectiveness--by behaviour analysts and others (some information about the UCLA FBP is here and here).

According to Canada's autism advocates, criticizing ABA programs is reprehensible. But if no one had criticized the apparently "effective" FBP, the world would look very different right now. As I've written elsewhere, we would not have recently had a political debate resulting in the acceptance of same-sex marriage in Canada. We would instead have desperate parents using the Canadian Charter of Rights and Freedoms--our highest law--to demand that governments fund "medically necessary" Lovaas homosexuality treatment. We would have all our national political parties, including our federal government, supporting "homosexuality advocates" in their demands for a "National Homosexuality Strategy" with an emphasis on surveillance, early diagnosis and treatment of this treatable--provided treatment starts early enough, and is sufficiently intensive--pathology.